“Great is the art of beginning, but greater is the art of ending.” -Henry Wadsworth Longfellow
The end of a patient-oriented research study is a very overlooked subject when it comes to planning the path that both you and your partners with lived experience will take together.
Endings come in many forms, from the benign to the dramatic. I never thought about it much as a partner until one exchange I had with another partner. The person with lived experience was closing up their time with a team and made a statement that left me in tears.
“I hope I won’t be forgotten.”
Human connection that works towards a goal of creating or facilitating change can be a powerful community experience.
I think sometimes amidst all the procedural work that goes on in a study, we sometimes forget the potential depth and breadth of feeling and intent that goes into why a person says, “yes” to partnering in research. A person’s answer to that is as variable as the unique life path they’ve taken to get here. There however, are a few universal things that we know about this decision making process.
It’s tied to prior experiences in the environment that’s being studied. While that seems like a given, we need to remember that relationships with the system can range from the positive to the negative. This can make the opportunity to partner in research an extension of those perceptions. Which is why we want to ensure that the outcomes from such partnerships are positive ones.
Partnership has the capacity to be tied to personal identity. We have seen examples of where building a “community of engagement” ties research and lived experience together in ways that keep us always learning together. There is deep meaning in walking a particular path but also blazing new trails at the same time. This is often why some people choose to partner again.
It’s also why it can be important to consider how we can plan for when partnerships end. Doing so can make for a trauma-informed practice in family engagement. When people most need closure it is usually because the termination of the event is significant to them, holding particular value and meaning.
Potential Ways You Can Plan for Completing a Partnership
a) A debrief meeting where you take an opportunity to thank your partner(s).
b) Plan to have dinner together. One of our FER team members hosted an Uber Eats night over Zoom as one example.
c) A planned activity time with the kids and a Child Life Specialist.
d) Offer opportunities for reflection on the experience throughout the research process. Share that learning path at the end of the study.
Closure plays a role in the process of moving on. For people with lived experience, providing closure aids in processing the partnership experience and affirming that it was time well spent.